Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Thursday, May 19, 2011

The Fear of Losing a Child With Angelman Syndrome

I just watched a video, that showed a mother of a child with Angelman Syndrome, state her concerns about losing her daughter to seizures. While the majority of "Angels" do live generally long lives, the reality of what she said is true. There's no study that I am aware of, that shows the percentages of angels who will lose their lives to seizures, but I know of quite a few. One is too many, yet too many have their lives cut short by seizures, that leave their families in sheer pain and despair. I've been there. My son lies six feet deep, in a cemetery with a tree that overlooks his gravestone. Right now, he would almost be seven years old, but a seizure didn't allow for that possibility. He will not continue going to school that he loved, or hear a bus driver sing "Happy Birthday Tommy" over the public address system.

Sometimes I stop by his plot, and just cannot stop weeping. Its been over a year and a half, and I will never get over it. I hurt for him, for my wife, his grandparents, relatives, friends, teachers, and for myself. My heart is so heavy, and there's been feelings of angst, guilt, and of pain that sometimes seems to be a burden too much to handle. Hearing of another family, whom I do not even know losing a child, or contending with seizures, causes me to cry buckets of tears. That is okay, but I dream of a day when a father does not have to carry his son or daughter's coffin, and watch it close upon their little one. I think about the mother, whom gave birth to this child, giving them a kiss before sending them to their grave. It is so unfair, that a parent has to bury a child, because it is supposed to be the other way.

Many share this same journey, and I am thankful for these kindred spirits. Its faith in a loving God, and these folks whom have showed me a new road in life. The pain is always there, like a dark cloud that refuses to stop chasing me, but to give up and accept defeat, that is simply not going to happen. Although there is pain, that has ripped through my soul, there are other parents and families that do not deserve the same fate. None of us are perfect, but no one deserves to bury their child, and by getting folks like the Vanderbilt University Kennedy Center help, then perhaps we can save someone from this soul shattering experience. Quite a few Angelman families and others have lost their child to seizures, and we must prevent them from such a horror. Please pray that a cure for these seizures can be discovered, and if you can find the time, do what you can to help Vanderbilt make the breakthrough that will stop the faucet of grief.


  1. WOW Mike, you really know how to make the tears roll .....

    God is behind us all the way on this fight. Satan will NOT win this one.

    All I can do is continue to pray daily that someday soon our fight will be over and seizures will come to an end with a simple fix.
    God Bless you,

  2. God is with us on the journey, through all of the trials and tribulations, we never stand alone. We fight together! Blood, Sweat, Tears=whatever it requires to get rid of seizures, let's do it. God bless you Carmen :)